I’ve been sick. A raging cold – sore throat, cough, headache, ache-y bones and general whininess. Not a big deal. Except when your baby happens to be in hospital undergoing chemotherapy.
Then it’s a huge deal.
But my body decided I needed to be sidelined. Daddy and Grandparents stepped up. I should be grateful. I am grateful. But it was also miserable not being there when she wanted Mama and I had to sing lullabies over the phone.
Last night I was finally back where I belong! Where I most, and least, want to be: in the oncology ward of children’s hospital. Just in time for another emotional roller coaster ride. Cause that’s how it goes these days.
Any illusions I had about long stretches of boredom during this experience have long since been obliterated. We have very little uninterrupted time in the day. Or the night. There are more people and procedures and poking and prodding than anyone should have to endure.
But this latest ride had an upswing. At least, as far as my daughter was concerned.
B has developed steroid-induced diabetes because of the meds she’s on. This has ushered us in to the wonderful world of glucose monitors and sub-cutaneous insulin injections, which isn’t as fun as it sounds (and it sounds horrible). After many days of screaming fits, freezing spray and restraining hugs, she decided it wasn’t that bad, and now merely complains and insists on choosing the exact spot for her needles.
Her blood sugars have been quite high. Consistently too high at night. As frustratingly unpredictable as her appetite. Revealing quickly to all involved that you can’t force my girl to do anything, least of all, eat.
While waiting for her bone marrow biopsy results they’ve put a pause on chemo, including steroids. Those results will determine the next step, so we might as well wait. Just one day, perfectly logical, why not.
Since her blood sugars have been extremely high this past weekend they’ve been treating it more proactively (read: more insulin). What they didn’t anticipate was her extremely quick recovery to normal blood sugar regulation. That, plus an even smaller appetite (without raging steroid hunger in the mix).
I stood my ground on the fast acting insulin. With her blood sugar already low and refusal to eat more than a few bites of dinner, it just didn’t make sense. I’m learning to stand behind my instincts as a mother. Even with professionals in the mix. The nurse herself seemed hesitant, so that sealed the deal. “Blame me” I told her, as she paged the endocrinologist again. “Tell them I won’t allow it.”
I should have questioned more. Or maybe it’s just one of those things. Her blood sugars have spiked overnight more than once, so a slow acting 12-hour insulin didn’t seem like a bad idea.
Thankfully they are monitoring her closely. I’m so grateful that they repeatedly stab her with needles while she sleeps – how bizarre is that sentiment? Her alarmed nurse woke her up to drink a large glass of juice and eat a snack. It took cajoling, but she is a fan of her new nurse (a man – which she finds fascinating) so she came around.
After the next poke, 15 minutes later, she was woken again with more urgency. We were relieved she was still responsive.
He came back to the room dumping handfuls of Halloween candy on her lap. I’m sure she heard the angels sing. After a week on a strict diabetic diet this midnight candy feast was like a dream come true!
She sat up in bed, cramming chocolate and gummies in her mouth as fast as she could, a huge grin on her face and a suspicious look in her eye.
Brent is now her favourite nurse. Ever.
I didn’t find this quite as fun as she did.
So here’s us, living up to our unofficial family mission statement: Never a Dull Moment.
November 18th, 2014 at 1:05 pm
Oh man, your life sounds insane Christie! But your ability to write about something so heavy and difficult and yet you had me laughing out loud at the picture of Becca being woken up in the middle of the night to eat candy!!!! I wish I could’ve seen her face! I can’t believe how much poking and prodding she has been through, and I can only imagine how hard that must be on you to watch. Sending you lots of love. xo
November 18th, 2014 at 9:08 pm
I should’ve taken a picture. It was pretty cute.
November 18th, 2014 at 8:23 pm
This sounds so intense for you! I was laughing at the thought of Becca spinning a web around all the nurses who were trying to get her to eat and then along comes Brent and magically she eats! Thank God for nurses.
November 18th, 2014 at 9:08 pm
You know her well!
November 18th, 2014 at 9:31 pm
oh man! adding that factor in just makes it so much more complicated. rats. I can just imagine her delight at that candy. How quickly after she stops the steroids will the diabetes subside? We have never had Brent as a nurse but have heard great things about him.
November 19th, 2014 at 12:38 pm
I guess we all get our own unique version if this. Although B is thinking, dreaming and talking about food, and insisting on watching cooking shows all day, she isn’t eating much. More nauseous and grumpy than hangry. That may come, or she might be the unusual 5% who react differently. The diabetes usually takes a week or two to peter off, but this seems to prove she only needs 12 hours to revert back to normal. Good news for us.
November 19th, 2014 at 8:02 am
I just read your post about midnight candy feasting. You are truly gifted, thanks for the glimpse into your lives.
Tomorrow is the day I am planning to come to the hospital, 12:30 ish. But only if it works for you. You can assign me whatever is best, hanging out Becca, so you get a break, taking you for lunch if your in-laws someone is there with Becca. Sitting with you in the room. Or running around Vancouver doing your bidding ie picking up candy & lunch.
On Tue, Nov 18, 2014 at 11:30 AM, So Here’s Us… wrote:
> So Here’s Us…. life on the raggedy edge. posted: “I’ve been sick. A > raging cold – sore throat, cough, headache, ache-y bones and general > whininess. Not a big deal. Except when your baby happens to be in hospital > undergoing chemotherapy. Then it’s a huge deal. But my body decided I > needed to be sideline”
November 19th, 2014 at 12:39 pm
A visit will be great. But the “doing my bidding” sounds pretty awesome too. 😉